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4 Responses to ““She Never Feels Well””

Try living each day with your children, in your home and at your side- because you are the 24/7 caregiver, with almost no breaks, and every passing moment is the stuggle to decide when, if ever, it is appropriate for you to comment, or complain on what is happening to you every minute of the day?

How would deal with constantly disappointing them, like for the hundreth time that day, every day, with all that you cannot do because you don’t feel well enough and you never feel well enough.

There is no good answer. But what will it do to your kids, and you, if they know that you never feel well, ever. Sometimes you might feel better than worse, but you never feel good.

Your post is my moment by moment life. I think it pains me more than anything, more than the actual headache, more than my own depression, because everything else in my life has a choice, everyone is an adult who can make their own choices, but my kids are stuck- this is what they get. This is as good as it gets and it isn’t much.
Sorry so long. Bad rant.

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I’ve drafted another post about why we don’t plan to have kids!

It sounds like things are really rough for you. I’m so sorry. I wish I had some words of wisdom to make it a little easier.

I don’t know if that’s something you can explain to anybody–children or adults–and have them really get it, unless they’ve lived it. At least that’s been my experience. The only person I know who really understands why I get so down sometimes about my migraines, and other areas of chronic pain is a friend who suffers from CFIDS and migraines.

Prior to ending up with chronic pain, I couldn’t relate to people who suffered from it, and to make matters worse, I’d read a a bunch of New Age books that left me with the impression that people should be able to heal whatever ailed them by either willing it away or dealing with their unresolved psychological issues. Now I know better.

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That’s a great point — no one really knows what it’s like when they haven’t been through it. Even if people can understand that headaches are painful, it’s impossible for most to fathom having severe ones on a regular basis.

I’ve found I can’t really even explain what’s going on with me to my parents… About the only one that can come close to understanding it is my partner. Even then, without something to “see” when my headaches are bad, it really isn’t real to them…

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My theory about parents is that they can’t bear to know that their children are suffering so much, so they don’t let themselves understand what it’s like. 🙂

I can relate to what people are saying about living with chronic pain, and how others respond to it. I have found that my family members and friends try really hard to have compassion, but patience is the challenge. I feel like I am always disappointing people with canceling plans, not being able to drive at night with the lights, and not answering my phone much because the sound hurts so much and triggers worse headaches (speaker phone sometimes helps).
So, it seems to really tire others out…and I’m tired of living this way too.